Sunday, July 23, 2017

What To Do When Your Child is Diagnosed

It's hard to believe, but we're quickly coming up on eight years since Ethan was diagnosed with autism. When I think of the tantrumming toddler with dirty blonde curls in that small interview room, compared to my gabby 9-year-old playing video games in the other room, the growth seems hard to believe.

Having a child diagnosed with a special need like autism can be overwhelming. I don't pretend to have all of the answers. But when I look back and think about it, here are a few simple things I wish someone would have told me.

1. Stop and take a deep breath.

It sounds so simple. It's not. Everything is coming at you. What's ABA mean? How many hours of therapy will my child need? Will he ever talk? How do I get a referral? What's an IEP? When will he stop acting that way? What if my insurance doesn't approve? The list goes on and on. I can remember having a pile of papers shoved at me in the developmental pediatrician's office. While I did appreciate getting some kind of written resources, it also felt like too much all at once. The pediatrician was talking but I almost felt as if we were under water. I wasn't completely processing all of her words. And I remember staring at this booklet they'd given me about autism, and it had this hokey drawing on the front of a kid lying on the floor spinning the wheels of a toy train. That picture infuriated me. I felt as if they were mocking kids with autism, treating it in such a cartoonish, clich├ęd way. I actually wanted to tear the brochure to shreds.

Bottom line is -- there is an influx of information and emotion, and you have to know that it's okay to stop and take time to process. You will hear all of this panic about young children's brains being malleable and you will feel as if you MUST get them as much therapy as possible, as quickly as possible, or all hope is lost, and valuable brain cells are dying and opportunities are being lost....but, STOP. Just for a bit. To gather yourself, your strength, and your support network.

2. Work on accepting that you cannot predict your child's future. Your child's therapists, doctors, and teachers can't, either.

This again sounds obvious but really, it's not. I can't tell you how strong the craving is once they tell you your child has autism. If you get through the acceptance part, the next step is usually, "Okay, but what will that mean for my child?" Only, it is very, very hard to predict. Ethan's developmental pediatrician said this from the start and again, I felt infuriated. Why? Really, it comes down to our love for control and distaste for the unknown. And of course, because we want our kids to succeed. We don't want them to hurt. We want to do something to make this all better.

The best you can do is do your best for your child in this present moment. Give them what they need right now. Yes, therapy at a young age is usually a very good thing. Therapy tailored to the child's personality and individual needs is best. But beyond that -- sometimes what they need is to be a kid. Remember there will be times when the focus should be on them having fun, enjoying what they like to enjoy, rather than trying to "fix" every undesirable behavior.

So many of us want numbers and statistics, and there aren't so many clear ones when it comes to autism, because there is no "one" autism. It presents in so many different ways. Some kids are mild with their behaviors and then regress. Others make huge progress. Some move on a very slowly improving trajectory. There are very few people who "lose" their autism diagnosis. Most were probably not diagnosed correctly in the first place. It's not impossible, just unlikely. There are also very few people who don't make significant gains in communication, social skills, and other milestones. So work on giving your child what they need...but also working on living with the unknown.

3. Focus on connecting.

It is very easy to get a diagnosis for your child and without meaning to, turn them into an assignment. When we work on connecting with them first before working on their behaviors or milestones, we are remember they are a child first. There are times I think we make demands on special needs kids that we don't even make on typical kids. It's very easy to see through the lens of their diagnosis, when really sometimes, they're just being kids.

I can remember talking to one of Ethan's therapists about the way the kids with autism are taught to look people in the eye and say hello. Yet if you watch any of the kids streaming down the hallways at school, if you greet them, you rarely get a classic "socially perfected" greeting. They're all over the place. Some aren't paying attention if you say hello. Some will answer without throwing a direct gaze your way. Sometimes without realizing we make demands on our kids that aren't expected from their typical counterparts.

This leads to why I am a fan of the Floortime method for approaching autism, which is based on following your child's lead and using that as a basis to connect with them first and building everything off that connection. That's not to say I am completely against ABA. I do believe the more severe the autism and particularly debilitating the behaviors, the more ABA may be a necessity. But whenever possible, and especially in everyday life, I love Floortime. Floortime means: if your child is obsessed with the string, you don't immediately take it away. You take joy in the string with them. You find a way to make a game out of the string. You are playfully obstructive with it to see if the child will try to connect with you to get it back. You step into their eyes for a moment and try to see the string the way they see it. You get creative. You meet them at their level and try to bring them along.

Again, this doesn't always work, depending on the behavior. But the philosophy is great -- see your child as a child first, who may have some "quirky" interests or ways of looking at the world. Love them. Connect with them. Then begin working with them.


The first days after receiving a diagnosis for your child can be hard. These are points that sound good in theory but are hard to put into practice at an emotional time. But once the emotions have settled, these can be helpful tools to pull out and do your best to apply, as you navigate a new kind of reality.












Monday, July 3, 2017

Empathy Overload



There's a scene in the movie Toy Story 2 in which the cowgirl doll, Jessie, heartbreakingly recounts how the girl who previously owned her slowly grew up over the years and lost interest in what was formerly her favorite toy. The doll ends up discarded under the bed, gathering dust, until the day the girl finds her and Jessie hopes against hope they will play together as they once did. Unfortunately, the girl throws her into a donations box and ends up abandoning Jessie on the side of the road.

That part of the movie had me openly weeping the first time I saw it. Both the second and third Toy Story movies have a way of doing that, don't they? These films follow the lives of what are actually inanimate objects, experiencing all sorts of heartache and joy. The toys come alive in such a way that after watching years ago Anna felt really bad for the My Little Ponies she'd shoved under her bed.

I don't think we'll be re-visiting the Toy Story movies anytime soon around here, because we are experiencing what I'd call "empathy overload" with Ethan -- and to say it's a little unconventional would be an understatement.

This is the thing: They say one of the hallmarks of autism (well, maybe not hallmark; more like a common trait) is difficulty with empathy (specifically defined as the ability to understand and share the feelings of another). But I will argue, as I have before, that sometimes the issue is not feeling the empathy -- it's feeling too much, and not knowing what to do with those feelings.

Ethan has gone through this phase lately that has progressively gotten more intense. It started with him getting rattled anytime I said "Awww." So if I suggested he wear a certain shirt, and he said no, and I replied, "Aww, I thought you liked that shirt" he would be bothered. A lot. He'd ask why I said "aww," and tell me how it made him feel bad, and bring it up before bedtime.

One incident like that in a day isn't such a big deal. But we've started to realize there are more moments like that throughout the day than you might realize. Especially if you're paying attention to other people, too. So Ethan started telling me he felt bad when someone couldn't get to the ball in gym class and was disappointed; or about something the teacher said; or something he saw on TV.

One evening at bedtime when he was falling asleep without using his pillow again I asked him why he never uses his pillow. Then he started to feel bad because he thought he had made me feel bad by not sleeping on the pillow, AND he felt bad for the pillow.

When he started saying he felt bad every time there was a choice to make, that one of the choices would be left out, I started to be concerned. Our days are filled with choices. Getting worked up about every single one could be crippling.

Thankfully, he's backed off that a little bit, but I'm still feeling bad about his feeling bad. Some nights before bed he's said his mind is full of all the things that happened during the day that made him sad: the ball that dropped, the moment I asked why he wasn't going to eat all of his chicken, the fan that broke that we'll now have to throw away.

We've had a lot of talks about this, and I usually reiterate the same points. I'll remind him that me or the other people that these things happen to are no longer sad or thinking about it (i.e. the dropped ball), so why should he? If it involves an inanimate object, like a toy running out of batteries, I remind him the toy doesn't have feelings. Movies and books sometimes make objects more real than they actually are, but really they are just objects without thoughts and feelings.

I can only imagine what watching one of the Toy Story movies would do to him in this state. Would he pull out the many toys he's ignored over the years, trying to give them all proper attention? I don't know.

Is some of this related to anxiety, or maybe the tendency for people on the spectrum to be rather obsessive or perseverate on small details? Maybe.

I think it most definitely has to do with developing a healthy dose of empathy, and that's a good thing. I don't want my child to start crying thinking he's made me upset by not using his pillow. But the idea that he's placing himself into my head, and trying to feel what I'm feeling, is an important milestone.

If you're autistic and your brain is wired a little differently, it would make sense that you learn and experience empathy a little differently. Maybe it's not baby steps and simple milestones building slowly over time. Maybe with Ethan it's an explosion of emotion that sometimes feels too hard to handle. Our job is, as always, is to help him navigate and come away with something useful he can carry with him always.